Lin and John Palin were sailing in Desolation Sound near Lund, British Columbia, when John fell ill, in pain and unable to sleep. The diagnosis came swiftly upon their return home: incurable cancer.
The Palins had previously discussed their wishes for end-of-life care with each other, but now it was time to re-visit those important conversations. “We had already talked about these things with each other and with family members,” Lin says. “So while it was an incredibly stressful and shocking time, those previous discussions helped to prepare us and manage the situation a bit better.”
As John’s condition worsened, those conversations expanded to include more family members and the healthcare team. “The doctors were very open with us right from the beginning,” says Karee, Lin and John’s daughter. “They were clear in saying that any treatment would manage pain and other symptoms, but would not cure the cancer. That honesty gave us clarity, and the ability to talk openly about goals of care.”
The family kept a book at the bedside with notes from conversations with the healthcare team, as well as cards from the various physicians so they could easily contact them with questions. “The notebook allowed for reflection and was there for all family members to read,” says Lin. “It also gave us a place to record questions and important contact numbers. It was an exceptionally valuable tool for all of us.”
Karee, who is a nurse, notes that her knowledge of various terms and treatments made it easier for her and the family to understand what was happening, and that people shouldn’t be shy about asking questions. She believes that it’s also important for the healthcare team to think about the family, not just the patient. “They need to think about what this looks like for the family, and how they are feeling as well,” she says.
When John’s sister Carol asked about continuing the IV, for example, the doctor explained that maintaining the IV would only allow the tumours to grow and increase his pain. He also confirmed with John in front of her that he was in agreement with this course of action. That discussion put the decision in perspective for her.
“The concern and care shown by the team allowed family and friends to maintain and respect John’s wishes,” says Lin. “They were willing to spend time to explain and answer questions no matter what the time of day.”
Lin says that the early conversations she had with John and family members were key to a quality end-of-life experience. “Don’t wait,” she advises. “You don’t know when something might happen and someone may need to make decisions for you. Make sure you give your family the knowledge they need to look after you.”
John passed away within six weeks after being diagnosed – and while the family misses him a great deal, they also feel comforted by the fact that they provided him with the end-of-life care that he wanted and deserved. “He wanted dignity at the end of life, and he got that,” Lin says. “That was so important for all of us. Knowing that his wishes were followed gives us some peace.”